Sunday, February 27, 2011

Dave and I took Maya to the playground today---our first family trip there since she's turned into a walking girl (I did take her for a few mins by myself to get a few pictures last week, but it was too windy for her to walk for more than a minute).

She had so much fun that when we said "Hey Maya, can you make a silly face?" She instantly obliged:

(it cracks me up every time)

She was able to walk everywhere!

(Yeah, I chuckle at 0:09 when she falls down. It's a proud mama chuckle---she knows how to fall! She doesn't hit her head on the ground! It's a very cute little fall. And I know she knows how to get back up﻿)

Increased ability for independent movement = increased potential to get into trouble. Maya spotted a little girl who had the exact same pink stroller that we have. And then proceeded to proudly steal it while said little girl was sitting in a pile of rocks and having her picture taken.

Innocent little girl playing in rocks at the tip of Dave's shadow, her mom is taking her picture while dad and grandma look on adoringly. I'm trying to convince Maya to bring back the stroller she's just absconded (upper left).

Then I started laughing and hissed "Dave, take her away and I'll bring the stroller back!". He tried to grab her up, but she wasn't about to let go:

Note the amused, proud expression.

That amused expression lasted for about 20 more seconds, until I peeled the stroller from her death grip and she had a holy screaming tantrum as Dave carried her away. Luckily, I had stickers in the diaper bag, since stickers solve everything.

ATTENTION ALL PARENTS OF CHILDREN WITH SPECIAL NEEDS (living in the US)

What do you know about tax deductions?

Do you have a great accountant who helped you learn about tax credits for parents of disabled children?

Did you figure out how to itemize and save yourself money?

Were you suprised to figure out things that you could take as deductions?

I'm over here, reading the IRS page and as many other sites as I can find. Our accountant doesn't have much (or possibly any) experience working with families that included children with disabilities, so I'm trying to figure it all out and package it up nicely for him. Help me!!!!!

Saturday, February 26, 2011

The title: Ever see Wheel of Fortune when they put 2 phrases together to make a puzzle, like "Hole in one of those days" (Hole in one, one of those days)? Well, we're on February break, I can't think of anything cohesive to write about, just weird little things, so I thought a title made of two separate thoughts was fitting. So I sat here thinking "February break . . . breakfast . . . break a leg . . ." . *Inititally the title was "February break your face" because I think "I'm going to break your face" is a hysterical thing to say. However, if you can't actually hear me say it, I realize that it could seem menancing and violent, so I changed it. I'm not actually a face breaker, you know.

Sometimes I can't put together anything cohesive, so here are some snippets about our February vacation week.

This morning we had therapy 1st thing, and before anyone gets all like "What?! On a Saturday?! Poor Maya!", let me show you what happened. I said "Hey Maya, Virginia (special instructor) will be here any minute" and when I turned around I saw this:

That's Maya, sitting at her table, and she had already taken out the big ziploc bag of little people, tables and chairs that they use to set up the birthday party. (She's holding up part of the wall for the party.) Clearly, she doesn't dread her therapists coming :)

Later in the day, we visited with cousins and then went to Barnes and Noble. As it turns out, having a kid who can walk is a lot of work (but I'm certainly not complaining). She knows where she wants to go (which is everywhere) and protests loudly when we grab her up. (One can only stand at the bottom of the escalator and clap for the descending folks for so long before it becomes less "cute" and more "get out of my way, kid").

She liked the train table in the kids section:

But then tried to lean on the little dude in the brown shirt, who seemed confused by why she was touching him. She doesn't really get social boundaries like that. Humans are for leaning on when you start to lose your balance, and it doesn't really matter who that human is. (We were there to quickly intervene.)

Other break happenings?

General mischief-making is always a favorite past time. I left her alone for 2 minutes with her toys while I cleaned up breakfast, and that's all the time she needed to find a random pack a baby wipes.

The fact that my initial reaction is to squeal, laugh and grab my camera probably encourages some naughtiness. Oops.

And we've had the chance to hang out with a bunch of family, including her cousins (we've seen 4 over this break!), who adore Maya. At my parent's house, Collin tried to teach her shapes (which was hit or miss) and Emmie gave her truck rides (which were really funny).

Oh, and I got my hair done. Now I'm very glamorous. Well, even moreso than usual.

Tuesday, February 22, 2011

In 1992 Kristi Yamaguchi won the gold medal for figure skating at the Olympics. Weirdly, I clearly remember the bio piece that they played before she skated. In it, they talked about how she was born with foot/leg problems and had to wear casts, braces, special shoes (I just wikipedia'd to fortify my 12 yr old memory, and she was born with club feet.) They talked about how her parents always knew she would walk and run, and that she started skating as a form of physical therapy. I (along with most of the country, probably) thought "Wow! Good for her! And good for her parents, for always having hope and never giving up!"

Kristi Yamaguchi with casted legs/feet. I'm not BFFs with her or anything, I just found this on Google images.

I mean, I was 12. I saw a picture of a little girl with casted legs and thought, how can any parent look at their casted up child and keep the faith that she will walk and run and jump? I marveled at their hope and faith.

But maybe they didn't have hope or faith.

Maybe they just knew.

I have a child with splints and a walker, who passed by her first and second birthdays without taking her first steps . . . but I can absolutely say that from the first times that I saw her stand and play, I've known Maya will walk.

Without a doubt. 100%. She would walk. It might take a few months, or a few years. She may need giant leg braces or walkers or crutches for a long while. But she'll walk. (And although we're not there yet, I also know that she'll run and she'll climb stairs. It will come.)

Not faith. Not hope. Not bravado. Just simple certainty.

The same simple way that you know that spring follows winter, I knew that someday Maya would walk.

Before we got to the walking, there was waiting, stretching, taping, splinting, laying on the mats and doing exercises. Propping her to stand at the coffee table and play standing up, shuffling just out of reach and lifting her feet for her to feel a step. Pulling to stand, then sitting. Pulling to stand, then sitting. Enticing her to cruise along the side of the couch by carrying my laptop to the end, then tricking her to go back and cruise the other way.

There was work. There was practice.

There was the mental marking of an infinite number of baby step celebrations (Her foot didn't turn like that yesterday! She couldn't get up so quickly a week ago!)

But there was quiet, patient certainty. I wasn't hoping she would walk, I wasn't kidding myself or keeping my chin up, I just knew she would. Clear, simple knowledge.

How did I know? I could see it. I'm with her all the time. I can see tiny shifts in her abilities that many, many people would miss. While strangers might see that she falls over 7 times at the playground, I see that she caught herself with her hands 7 times (!), and she's not tipping over backwards as often.

They see the things that she has trouble doing, and I see how far she's come.

They see the things that she can't do yet, and I see that this month she can do things that were inconceivable 2 months back.

They see a girl held back by splints and a walker, and I see a girl who is zooming (sometimes too quickly for her own good) around a mall.

They see disabilities, and I see new abilities.

And I'm not judging them for it . . . really, how could an outsider see it any other way? They see her walker and her, um, interesting new way of taking steps (she looks like she's rock climbing as she walks---hands and arms in the air as she overcompensates for her weak core by using her arms to help her go) and it really jumps out that she's working harder than the average toddler to get around. It's easy to see her challenges, but it's impossible to see how far she's come.

Hands up, like she's climbing rocks, to help her move and balance

But I see it all the time. And luckily, it doesn't matter much to me what other people think she'll be able to do (well, except for Dave. But that's for another post, maybe a "part 2").

I would bet that there are a lot of other moms out there who feel the same way. Although I had the idea for this post a while ago, I waited until she was actually walking to speak my mind, just in case there were any sweetly sympathetic readers out there who might respond with the cheery "Oh, Dana, of course she'll walk! Keep the faith! Fight the fight! Keep smiling!" I love the positivity, but it kind of misses the point for this.

What's the point again?

I guess the point is that parents are often gathering massive amounts of qualitative data on their kids (oh, my science nerdiness is showing, isn't it?). We remember the past, and we're proud of where we are today. (If you see a toddler with a walker at the playground, don't feel bad for that kid---she's happy to be moving independently. And don't feel bad for the mom, as she's likely excited that the walker is working, and wondering how she can help her kid get up the stairs to follow the other kids.)

Also, we can see the future. Kind of. Sometimes it's just easy to see the road our kids are walking on, and we can be totally certain of something that you may think we're wishing and praying for. Sometimes, for us, it's easy to see.

(And lest anyone roll their eyes and think "This must be easy to write, now that Maya is taking her first steps and all", I'll throw another one out there. Maya will talk some day. I'm completely sure. Maybe not until she's 5 or 6-or later- but she wants to, and she tries. Someday her muscles will catch up, and words will come. I don't say it boldly, or as a dare, it's just a simple truth . . . after summer comes fall, and someday Maya will talk. Simple.)

Saturday, February 19, 2011

are up on the Facebook page (which is set to public, so you can go and check them out even if you're not on Facebook). It's just easier to quickly upload there :)

Pics include highlights of the week (literally and figuratively)---a few from Maya's first time walking outside, then first time walking at the playground, then my first time back in the salon since this little debacle. Yeah, that was almost a year ago . . . don't most people get highlights once a year?

Tuesday, February 15, 2011

Subtitle:How to Be a Productive Member of Society a Group Preschool Tour

I've been to visit a few preschools recently, and frankly, I'm shocked at the lack of social intelligence that many adults have. Admittedly, I have a low tolerance for people in general (I smile politely, but on the inside I roll my eyes) . . . but the questions that I have to sit through at these things would drive even a nice person over the edge. So here's an education on being a productive, non-annoying, contributing member of a group info session and tour, broken into 3 easy lessons:

(FYI: While I'm writing specifically about a special needs preschool tour, these general guidelines are so universal that I think they could even apply to a normal college tour)

General Information:
You're playing the long game. The "Group Information Session and Tour" is only Step 1 of the many step process of "getting in" to a preschool. If you're interested in a school, Step 2 is generally bringing your child back for a playdate. At this time, if you're still interested, and the school is interested in you, you can ask every question that you've ever had. But the group tour? It's only Step 1. Step 1 is for broad, general information. Pace yourselves.

The players:
Have some social intelligence, folks. This is not you, alone, in a room with a school director. There are other people here, and while you don't have to be their buddies, it might do you good to consider that everyone who is there has their own perspective, and they aren't there to hear about you and your kid. Your company will probably include:

-Parents who realized quickly that this school is not a good fit for them, but feel obligated to politely stay until the end.
-Parents who are sure this school is the perfect fit and are excited to come back for a play date, and are waiting until then to ask a million questions that are specific to their child.
-Parents who are visiting a special needs preschool for the very first time, and are feeling the emotional blow of realizing that this is where their child fits.
-Parents who have been on 8 other tours this month, and just want to get the facts and get out.
-Parents who need to get to work.
-Parents who are worried about how their child is managing with the babysitter.

Lesson 1: Questions during the Infomation Session:
The school director/session leader is trying to make a cohesive presentation---they have important things that they want to tell you about their school, and want to address the most common questions that they get. But they can't get through their presentation because you. keep. interrupting.

Asking a few general questions is fine (after the body of the presentation). We are all here to get information about a school's practices and policies, and you may have questions that are appropriate and useful.

However:
-if you have asked 8 questions and no one else has asked any, it's time to stop.
-if the school director/tour leader starts to give you a sideways glance when your hand goes up, instead of pleasantly calling on you, it's time to stop.
-if you feel the need to say "Just one more quick question", then you're already apologizing for monopolizing the time, and you need to stop.

Lesson 2: Dumb Inappropriate questionsExample 1: We are in an observation room (the classroom has one-way mirrors and so we're in a mini-room where we can see and hear (through a microphone system) the classroom, but they can't see us). In the corner of the classroom closest to us, a teacher is handing out toys cars from a basket, saying "And Tommy, this car is for you. Do you know what color it is? It's blue!" etc.

Mom in my group: "Question---I notice that the teacher is selecting the cars and handing them out to the children. Now, I'm just wondering, would there be other times when the child is allowed to pick their own car from the basket?"

Mom in my group: "I'm just asking because my Joey loves playing with cars, but he really prefers the ones that have the big wheels on the bottom. So I want to know if he would get a chance to play with them, or whether he would just have to have whichever car the teacher gave him, you know?"

Me (on the outside): (turns away from the group so no one can see me stifling a laugh)

Me (on the inside): Seriously? Are we really spending time discussing the intricacies of the school's toy car distribution practices? Please shut up. I don't care about what type of car Joey likes. I'm betting no one else in this group does either. And I don't care how they hand out their cars---this is a great school, they clearly know what they're doing, they don't need parental micromanaging input on how to best pass out plastic cars.

Example 2: We are in an empty classroom, looking around at all of the cute little art things, their daily schedule, etc.

Mom in my group: "I notice that they have play-doh here. Do they use that a lot?"

Tour leader: (Gives some answer about art time)

Mom in my group: "Oh, ok. My daughter Ally is just really starting to discover play-doh and work creatively with it, but she only wants to use her hands and not the utensils. Would that be something that they would work on, encouraging her to use the utensils?"

Me (on the outside): (turns away to stifle a laugh)

Me (on the inside): Seriously? Our kids are 2. "Discovering play-doh and work creatively with it" makes it seem like you think she may be the next Michelangelo. She's probably squishing it, shoving it into the container, and eating it. I'm sure these teachers, who work with 3-5 year olds all day, have a great system for play-doh time, and a bucket of play-doh appropriate "utensils". They're professionals, they know how to help kids with the play-doh. (Eye roll)

Lesson 3: How to decide if your question is "Group Tour Appropriate"
Helpful questions are general questions that could apply to more than one child (in other words, it's not all about your kid). Some examples: Are you able to handle children who need support walking? Do you have experience with assitive technology for communication? Are any of your speech therapists PROMPT trained? Those are some questions that could pertain to my kid, but also might provide helpful information to others in the group.

Need help figuring out if your question will turn you into "that mom"? Here are some self-check questions:

-Is it too specific? (Like the car distribution question) If yes, then rephrase:
"Will Joey get a chance to choose a car with big wheels?" can easily turn into "Do the children get any choice time to play with the toys in this area?" Win-win.

-Are you using the question just as a vehicle to share tidbits about yourchild? (Like the creatively working with play-doh question) If you want to start your question with a story ("Mary was playing with that same toy the other day! Would her class play with it here?") then it might not be necessary. You don't need to sneak in cute information about your kid to the tour leader. This isn't "The Bachelor", folks---no one's getting a rose at the end of the tour. We already established that Step 2 is to come back for a playdate----save your stories for then.

-Is this question really going to help you decide whether this school is a good fit for your child? Really, if they tell you "No, they don't get to choose their own toy cars" are you going to wave your hand, say "Ok, we're out" and leave the tour? Do you really even care?

-Are you forcing your agenda? If you ask 3 questions about ABA (or PROMPT, or music therapy, or time outs or whatever thing you have in mind) and are repeatedly, gently told "That's not really our thing here . . . we chose to instead address things this way . . . " then get the message. If you're still unclear, follow up with the school director in a one-on-one conversation. If you keep saying "But Marcus really benefits from a structured hierarchy of stickers", you look foolish. Again, you're at this school because you've heard good things . . . you either need to get on board with their methodology or find a better fit elsewhere. There may be room for compromise, but the group tour is not the place to hammer out those details.

-Is it too specific for Step 1? We're all here to learn the basics about this school. It's not important that I learn about their snow day policy right now, or whether they prefer lunchboxes or lunchbags. These are things that you only need to know once you're child is coming to the school. These are Step 3 (or maybe even Step 4) questions. Again, pace yourselves.

-Are you beginning to get death looks from other parents? Are people sighing loudy? Pointedly checking their watches? Take the hint.

In Conclusion
Looking at schools is overwhelming, and nerve-wracking. Each of us wants to find the best possible fit for our child. We all have questions and concerns, but I don't care too much about most of yours and you probably don't care too much about most of mine, either. So let's agree to listen to the presentation, ask general questions, and save the detailed stuff for later. Thanks.

Monday, February 14, 2011

Maya dressed in her red heart shirt (thanks, Grandma) and even found her old heart sunglasses :)

She's so clever, this girl. She pushed the sunglasses up like a headband, just like Mommy does.

And then we ran into Maya's Mega-me. (That's the opposite of Mini-me, right?).

In the foreground, Maya 2011. In the background, Maya 2111.

I can't help but wonder if the older folks in the neighborhood think we're making fun of them. You know, like "Why doens't that woman just get her kid a shopping cart toy like everyone else?! grumble, grumble A mini-walker? Is that supposed to be funny?"

(Seriously, that lady was nice. I don't think she even noticed Maya's walker.)

Thursday, February 10, 2011

I had a rough morning, a not-so-great preschool tour (more on that some other time).

Maya must have known that I needed some cheering up . . . she decided to show off her walking skills (more than I've ever seen).

A few things:

1. If you have your sound on, you can hear her "talk" :)
2. It looks like she's going to crack her head on the wall, but don't worry, she doesn't (I'm letting you know so you can watch without cringing)
3. I love how she knows where the barn is, even though I don't.
4. See how she peeks around the doorway (1:04) instead of going into the room? And then she keeps glancing to her left when we're in the spare room? That's because she's suddenly become very wary of the snake----she points to the cage, wants someone to walk over with her and look at the snake, etc. We don't watch tv (so she's never seen a scary snake) and keep puzzling over why she's suddenly nervous . . . and then we realized that one of her favorites books (Dear Zoo) talks about a snake being "too scary"! I think that's where it's coming from. How smart is she?!

Tuesday, February 8, 2011

Maya wants to show you . . . . . . .that she is not to be underestimated :)

She was eating a waffle and looking at a zoo book. I randomly started asking her to point to animals and was floored to see how many she knows. When did she learn these things?

Ironically, her psych evaluation says that her receptive language---words she understands--- is actually less than her expressive language---words she can say. She can only kind of say 1 word (bye bye- "ba ba") . . . so we can infer what they're implying about her receptive abilities. Take that, psychologist-who-was-late-and-not-engaging-at-all. (Oh, and her special instructor knows all of the names of the Little People---the only one that I know is Maggie)

Parker wants to show you . . . his new shoes.

(How embarrassing)

They're for function, not fashion. He was so psyched to have his stitches out (post-neuter) and be free to run, but quickly cut open 2 of his paw pads on ice :( So now he has rubber booties to protect his feet.

And, just for fun, here's some video of Parker running at the dog park this morning :)(If you watch closely, at 0:05 and 0:21 you can see my boot pop into the screen as I kick the ball. I am a master high-kicker.)

(As always, if you don't see the videos, just click the play buttons and they will appear)

Sunday, February 6, 2011

Friday we had our preliminary IEP meeting. For those of you lucky enough not to know what that means, here's a quick and dirty summary. Maya is a special ed student----she will be entering preschool in Sept and needs and "individualized education plan". When a 3 year old has an IEP, it mainly specifies what type of classroom she will be in (the ratio of kids to adults), what therapies she will get, and other special things she might need (like an aide).

Due to the dire state of Maya's evaluations, I allowed myself to think "This hopefully won't be too bad. Obviously, she needs oodles of services. Maybe there won't even be an argument." I read the reports, highlighted things, had letters from our pediatrician and private feeding therapist, supporting the fact that we need a lot of stuff (just in case), and put together an awesome binder. I was totally prepared. I even blew out my hair, so as to look professional and put together.

Yikes.

My faux hawk mullety 'do

Ok, my hair wasn't helping. But with really strong gel, I tamed it into submission.

I'm not going to give a blow-by-blow recap of the battle that was the preliminary meeting, because I don't have the emotional stamina. But here's the summary.

Pro's: Maya will definitely have a seat in a center based pre-school (it's still up to me to find her a spot in a good school, but the city will approve that spot once I find it). She will definitely have a one-on-one aide (paraprofessional). She will definitely get the maximum number of therapy units that are provided by whichever school we go to (each school has their own maximum---for example, one school only provides a max of 2-30 minute PT sessions per week).

Con's: In addition to the therapy in school, I want her to have therapy outside of school. The guy in charge of our meeting says no. He says it's his job to provide us with an appropriate school setting and nothing more. I say that I want her current level of therapies to be maintained, and that since the school can only provide a certain number of sessions, I want the remainder done after school. He acts like I'm asking for the moon, I say that this is neither an uncommon nor unprecedented request. We stare at each other.

The bottom line: I now have a lot of work to do before the next meeting in April (that's when we'll actually sign the IEP and agree on the preschool and the therapies):

-I'm touring another preschool this Thursday.
-After that tour, I need to figure out which (of 2 schools) I like better, and schedule a playdate for Maya to go to that school and be screened. Hopefully we get a school that says that she's a good fit and they will provide her with a spot.
-I need to gather prescriptions, letters from doctors (as many as possible), letters from all of our therapists, progress reports from all of the therapists, and whatever other evidence I can think of to argue for the inclusion of after school therapy in her IEP.
-I probably need to hire an advocate to attend the April IEP meeting with me. (Strength in numbers and all that jazz)

Also, I'm swinging into high gear with putting together our dreaded insurance appeal.

It's very difficult to feel powerless.

I know what I'm doing. My binders are no joke. The way that I am able to write rationales, organize paperwork, compile data . . . I'm pretty good at it, I think.

It's rip-your-heart-out-painful and I'm-going-to-go-postal-on-your-azz-frustrating to put together work that's so good you think "How could any rational person argue with this?" . . . and just have it met by a pencil pusher who says "Um, no. End of story. But feel free to file an appeal if you disagree." (Smug smile and a shrug)

(PRIMAL SCREEEEEEEEEEEAAAAAAAAAAAAAAAMMMMMMMMMMMMMMMMMMM)

In a teary conversation with Dave last night I realized that I need to find a way to compartmentalize this stuff more---to not take it personally when the insurance people send me to another dead end, or this guy says "I'm not going to give you any of that, but we can talk about it again at the meeting in April if you want."

I have to carve out some sort of zen, centered life, with satisfying and pleasant things, so that insurance appeals, IEP fights, etc (there may be a few other similar battles on the horizon) just become projects-I'm-working-on, and not things that keep me from getting a good night's sleep, and make me cry frustrated tears.

(sigh)

On a lighter note, our OT went to a taping workshop on Monday and now likes to tape Maya up. Hee hee.

PS-Grab the "My plane landed at Amsterdam International" button if you have a blog or website. Putting it up does three things: 1. It makes you my new bff, 2. It breaks the ice in sharing some of your experience with your friends/family 3. It helps spread the message to others who may be comforted by knowing their not alone :)

Wednesday, February 2, 2011

That's not some kind of cute "it's really cold out because of the ice storm" title . . . I'm just saying that I literally now have a button up. On the blog. Right over there ----> (the upper right hand corner of the side bar).

So, if you've spent any time in Amsterdam International, grab the button and display it proudly. Like a badge of honor, a war medal, a bumper sticker :)

If you add the Amsterdam button to your blog and would like to share your blog with others who pass through here, feel free to post a link in the comments section of this post!